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Diagnosed today!

Hi everyone,

After 7 long years I was diagnosed today with RRMS.

feeling relieved! Is that normal? I’m not scared at all just curious as to what will happen next.

now waiting for an appointment with the ms nurse to discuss medications.

What should I expect from this first appointment?

Thanks for reading :slight_smile:

becca

Hi Beccaboo,

You know you’re welcome; but not a good reason to be entered into this club.

This will give you an insight from a trusted website on what to do; https://www.mstrust.org.uk/understanding-ms/diagnosing-ms/newly-diagnosed-multiple-sclerosis/what-happens-after-ms-diagnosis

The only legal thing you must do is advise the DVLA; should be no problems. In the same instance; advise your insurance company; not legal but logical; if you do not advise them they could wriggle out of a claim.

If you have a mortgage; do you have ‘critical illness’ cover; if so claim and pay off your mortgage?

Good luck

George

Hello Becca

Um, welcome to the club. I don’t think it’s unusual to have a large helping of relief when you finally get the news you’ve been expecting for weeks/months/years.

But don’t expect that state to be your only emotion about it. Once you’ve relaxed into the knowledge, you may find that you start to feel all the other states: rage, fury, anger, annoyance, despair, and others. Because when you’ve been battling to be diagnosed, you tend to forget that once the words ‘you have MS’ are said, there’s no going back.

So don’t forget that you can come here and wail at us. We know.

Your appointment with the nurse, is this a regular MS nurse with whom you’ll also be discussing DMDs? Or a dedicated DMD nurse? If it’s the former, then expect to be discussing all your various ongoing symptoms etc as well as DMDs. But if the latter, then it’ll all be about DMDs.

Have a look at the decision tool https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid This has details of all the DMDs available. Remember that they won’t all be available for you to choose from, so don’t pin all your hopes on one. Your choice will be limited to the drugs that have been set up for your local area (each drug has to be formally recognised as being prescribable at a given location). And also on how ‘active’ your MS is, which is based on MRI evidence. But you’re pretty definitely going to have the choice of at least one of the old injectables (Avonex, now called Plegridy, Copaxone, Rebif and Betaferon) and Tecfidera. You may also have the option of Aubagio. If your MS is highly active, you could be offered Lemtrada. But you may be able to choose from more than this list.

Have a look at all the drugs so you’re familiar with them, but keep your options open.

Best of luck

Sue

You were so right.

Relief has now turned to panic.

Literally a sobbing mess tonight.

I’m so worried about what is going to happen to me and my children.

told my children’s father who is my ex now and he said oh god so you’re going to be a cripple. Think that’s what has started me off being worried etc.

Thanks for your replies x

well what a tactless tosser he is!

good job he’s your ex, saves you the bother of a break up.

we will support you.

who knows who is going to be a cripple.

lots of cripples have never had ms.

after 9 years i now think of other people with ms as “my tribe”.

your children will still see you as mummy.

some things have to go when a relationship breaks up, so you might not be able to afford many treats but you have time and love for them and they are the best treats of all.

see how strong you are, break up with your partner and you carry on, diagnosed with ms and you WILL carry on, just focus on the important stuff which is your children and your treatment.

be strong warrior!

carole x

1 Like

Aw Becca

You won’t become a cripple over night. Your children will still have Mum. And you will still be you. Plus your ex will still be ex. Thankfully (w*nker).

You will get some proper disease modifying drugs and will hardly have any further relapses. Yes, you’ll probably have a bit more fatigue than most people. Yes, you’ll have to keep track of your health. But basically, life will go on.

Just remember. It’s sh*t having MS. We understand. We will be here to talk to. And so will some of your good friends. Some of mine are absolutely brilliant. They get that I’m still me even though I am one of the unlucky people who’ve had more disability than you are going to.

And you are diagnosed at a point when there is an incredible number of DMDs available. And even more on the way. You’ll be OK. Honest.

Sue

Thanks Sue

I really needed to hear that.

I guess everyone fears the unknown.

I know life goes on I just need to get past this first hurdle and I’ll be stronger than ever :slight_smile:

Becca

You are know different then the day before your diagnoses you were coping then. I think sometime having the label can send us into a spin of worry and anxiety, but we forget like you and me (i waited 10 years) you have had this 7 years well you have been trying to get answers for 7 years you probably had it before then, so are you a cripple now? No you have probably had it a good 10 years and just carried on as you normally did.

So my advise to you is just carry on as normal, find out what is next by the neuro your young so should do well with DMD, and like others have said you may not have another relapse for a long time.

Just pace yourself, dont push yourself, look at your diet, no more processed food lol, or sugary stuff, get active and healthy it does work and it does help.

Tell your children you have an illness that might make mummy more tired then usually in the next few years but its nothing to worry about. Get them helping you a little more make it a game, and use a reward system for them. Make it fun, so they dont become scared.

You can do this yes of course you will be scared, its like a grief and goes in stages, but try not to show your children, if you can and when you feel good take them out and make them feel special and yourself. Dont forget to treat yourself, new hair do lol, nails, go get busy hun, just because you have MS doesnt mean you wont have another partner. I know quite a few people who have met on MS groups and married and are very happy.

Remember you have had this a long time, and your still here, and your not crippled, by the way MS does not cripple us in the sense of the word, yes it may slow us down, and make it harder to walk, but a lot of people have this without MS.

MS is a challenge are you up for it? Of course you are, and tell your knob of an ex to go and do one lol. xx

NB: I will share this i wasn’t going too. I met a lovely lady through my passion for chickens she came to see me to collect some off me. She was my age well a few years older then me, and had been diagnosed with MS for years. RRMS. She worked everyday in a fantastic job, and travelled all over Europe and the states, and was actually just back from a routine visit to Holland when i saw her. You would hardly believe she had MS to be honest she got tired yes and had her odd days of aches and pains but just pushed through as she loved her job.

I met her in 2015 we talked all the time on facebook and i followed her flights and conferences.

She complained of a weird back ache and was going to the GP with it who kept saying it was just her MS nothing to worry about.

After nearly a year she started to show signs of wear and tear and was finding it really hard to carry on with her job. I told her Sophie, you must go back to a private doctor and get this back sorted there is something not right about it. Finally she did, and it wasnt MS at all causing it. Sadly she had cancer in her spine which had become inoperable and was now in the terminal stage. Just like that.

We talked every day this year on facebook and she was kept downstairs in her huge kitchen which became her sick room. She was so strong we forgot she had MS. She fought a hard fight but sadly we lost her 4 days ago, she went quietly in her sleep. I was devastated as she was my idol to be honest. 69 she worked all her life never had a day off even with her MS, and she was so well loved and respected by the people in her field.

Why am i telling you this i am not sure to be honest, just to show you, she had MS she never let it get her down and she carried on working hard and it wasn’t MS that crippled her in the end in one respect it was NEGLECT if he had been taken seriously at the beginning she may well have still been here, as the cancer would have been operable and not Metastasised.

So dont worry about the MS you will always have it, but you can still also have a normal life a good life a rewarding life, watching your children grow, get married have children of their own, like she did.

Science is finding new ways to deal with MS and there are a lot of good drugs out there now, so find out what is going to be right for you, and live your life the best you can as non of us know what is around the corner for us.

I am sorry if anyone find my post offensive but i felt the need to share and i felt it relevant.

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